Resource Directory /

Health Condition and Disability-Specific Resources

  • National Down Syndrome Society

    The National Down Syndrome Society (NDSS) aims to empower individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities and shifting public perceptions.

    Its resources include information on Down syndrome across the lifespan as well as in the areas of aging, caregiving, education, employment, health and more.

  • National Federation of the Blind

    The National Federation of the Blind (NFB) is the oldest and largest nationwide organization of blind people in the United States. NFB helps create a wide range of opportunities for children and adults who are blind in all 50 states, Washington, DC, and Puerto Rico. Programs and services cover a wide range of areas, including advocacy, education, Braille certification, parent support and resources, training, employment, technology and more.

    A small sampling of NFB resources includes:

    For more information, contact NFB at (410) 659-9314 or nfb@nfb.org

    There is also an Illinois chapter. Visit the National Federation of the Blind in Illinois website, call (312) 343-8396, or email  president@nfbofillinois.org.

  • National Institute of Dental and Craniofacial Researchsun-icon

    The mission of the Institute (NIDCR) is to improve oral, dental and craniofacial health through research, research training, and the dissemination of health information.

  • National Library Service for the Blind and Print Disabled (NLS)

    The National Library Service for the Blind and Print Disabled (NLS ) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical or perceptual disability that prevents them from reading or holding the printed page. Through a national network of cooperating libraries, NLS offers books the way you want them: in braille or audio, mailed to your door for free or instantly downloadable.

    NLS works to ensure that all may read by providing eligible individuals access to reading material regardless of age, economic circumstances or technical expertise.

  • National PKU Alliancesun-icon

    The National Phenylketonuria (PKU) Alliance (NPKUA) provides help with understanding and managing PKU from diagnosis to adulthood. NPKUA resources include a New Parent Support Kit, a Kindergarten Kit for children entering kindergarten, a downloadable PKU Binder Toolkit, guides for educators and information on the latest treatments, insurance coverage and terms, a mentor program, cooking and food, research grants and more.

    NPKUA hosts “Community Call.” These monthly peer support groups offer a place for sharing and connecting with others who understand the unique challenges of living with PKU. Please see the events calendar on NPKUA’s website for meeting times and other details for each of the following groups:

    • Caregivers of children ages 0 to 3
    • Caregivers of children ages 3 to 12
    • Caregivers of teens ages 13 to 17
    • Adults with PKU ages 18+
    • Adults with PKU ages 40+

  • New to Seizures and Epilepsy Toolkit

    Hearing about epilepsy and seizures for the first time can be frightening and confusing. The Epilepsy Foundation’s “New to Seizures and Epilepsy Toolkit” provides a starting point for individuals, parents and caregivers to learn about:

    • What epilepsy is
    • Available resources
    • How to make the most of doctors’ visits
    • How to take control of seizures

    Individual fact sheets on topics including seizure first aid and developing your own seizure response plan are also available. All materials are available in English and Spanish.

  • Northlands Association for Special Recreation (NASR)

    Northlands Association for Special Recreation (NASR) is a cooperative partnership between the Belvidere, Freeport and Rockford Park Districts. NASR programs are open to individuals with disability-related needs including physical, mental and developmental disabilities, mental illness, behavior disorders and visual or hearing impairments.

  • Options & Advocacy for McHenry County

    Options & Advocacy is a service coordination agency that provides information and referrals, screening, evaluation and assessment, service plans, community education and more for children and families in McHenry County. Its programs include:

    • Child and Family Connections Program, an Early Intervention program
    • Autism Resource Center
    • Helping Us Grow (HUG), a home visiting program
    • All Our Kids (AOK) network
    • Sibshops
    • Playgroups

    For more information, visit www.optionsandadvocacy.org/.

  • OSF Autism Pathways

    OSF Healthcare Children’s Hospital of Illinois’  OSF Autism Pathways provides tools, information and resources to help individuals of all ages navigate their autism journey. The OSF Autism Pathways team can help answer questions about treatment options and other concerns. It can also help connect individuals to autism services and supports.

    OSF Autism Pathways’ services and resources include:

    • General autism information and resources
    • Autism diagnostic services
    • Behavioral health, crisis and respite care supports
    • Daily living skills development and transition to adulthood planning
    • Employment and job coaching
    • Family supports and financial planning
    • Social and recreational opportunities
    • Therapeutic interventions

    To refer yourself or your child, please call (844) 910-0770 or (309) 624-4830. You can also fill out the OSF Autism Pathways online form.

  • Over the Rainbow (OTR) – Housing for Individuals with Physical Disabilities

    Over the Rainbow (OTR) is an Illinois non-profit organization providing independent living solutions for individuals with physical disabilities that are:

    • Affordable
    • Accessible
    • Barrier-free
    • Person-centered

    OTR’s apartments are located throughout the Chicago region and Northern Illinois. Applicants must be at least 18 years of age and meet OTR apartment communities eligibility requirements.